Tag: fibromyalgia

I was talking to my therapist the other week, trying to describe to them the pain that I’m in on a regular basis. They were (understandably) concerned, and I found it difficult to relate the information objectively without alarming them.

I hate when I alarm people, simply by being and living the way I do. I’m not trying to shock them, but when folks become acquainted with my interior life, yes, it can be shocking.

Now, I can’t imagine that anyone is going to offer me physical therapy that can help my situation. What exercises could I possibly do, to address the myofascial all-over pain that wreaks havoc with my sanity? What specific routines could anyone recommend to ease the aching scream in my joints and the connecting points in my lower back, hips, knees, elbows… you name it…?

It’s not that I dispute it can be addresed — this pain, I mean — it’s just that I’m skeptical of the ability of others to prescribe a suitable solution for me. I’m just not that easy. Or easily explained. Besides, the pain tends to travel. Where is it today? Only today will tell.

What I do not dispute is the benefit of exercise. Daily. Routinely. As part of my waking-up ritual. I get up, and the first thing I do, is get on that exercise bike. Then I stretch. Then I lift. Not a lot of weight, but enough to notice it’s there. Enough to make my muscles burn in a good way, get my heart pumping and my skin sweating. Enough to remind me how far I’ve come, and how far I have to go.

One of the things my therapist mentioned was that physical therapy can help the knees. This I know. You help the knees — joints which can’t be helped directly — by strengthening the muscles around them. You don’t fix the joint. You fix what’s around it, what’s supporting it, what’s holding it together.

And it works. It took physical therapists years and years to figure that one out, and now we can all benefit.

From where I’m sitting, the rest of me benefits in the same way. The weak and crackly shoulders I have, the weak and crackly back I have, the weak and complaining legs I have — hips, knees, ankles — are all improved when I strengthen the muscles around them. Even my neck, which is a wreck, most of the time — pain and stiffness and the third vertebra from the top turning out to be pushed out of place every time I pay close attention to it — is helped by a good dose of concentrated lifting. In fact, when I was doing a lot of heavy weights, back about 10 years ago (and pretty much built of solid muscle, thank you very much), my neck always felt better when I did 70 lbs worth of shrugs.

You should have seen the looks on the faces of the other cubicle dwellers I worked out with, when I walked over and grabbed two 35-lb dumbells off the rack and started shrugging away. Priceless. But it worked like a charm. By the end of three sets of 12, my neck felt 200% better than it had before. And the benefits lasted for days. And the same was true of the rest of my body. I always felt so much better when I lifted regularly. And one of the things I resent losing the most, after my last fall in 2004, was the ability to go to the gym and work out without overwhelm or anxiety. I miss it. I still miss being able to go out and work out. But for now I’m doing what I can in the privacy of my own home.

I do what I can to build muscle. And it doesn’t get built on its own. It takes work and concentration and dedication to a greater cause. It takes persistence that defies logic and human resolve. It takes tenacity and a small dose of fear of what might happen if I don’t do it. Muscle doesn’t get built on its own. But when you do build it, it works for you.

Sometimes you gotta give a whole lot, before you can expect to get anything (no matter how small) in return.

I guess this is what I’m doing with my life, these days –giving a lot to get something back. Building up the proverbial muscle around the weak spots in my life — building up routines and strategies and techniques and tactics, to support the weak parts of my brain, the parts that got broken, the parts that won’t be fixed, no matter how determined I am. I’m re-routing around the burned-out shells of my old domains. I’m blazing trails through the jungle, to skirt the blown-up bridges in my neural network. I’m carving out new pathways in uncharted territory, and I’m moving what deadfall I can from the paths I must tread.

A blown-out knee, in and of itself, cannot be strengthened. It’s just bone and cartilage and connective sinews. But the muscle around it can — and should — be strengthened, and function can be restored to the leg and the body. A broken brain, in and of itself, may or may not heal. The neural connections that get shredded, are frayed for good, and nothing can return them to their original pristine state. But there are other ways of connecting disparate regions, and there are plenty of strategies and techniques available to get from Point A to Point Z in fine style.

I can sit around and bemoan my fate as an mtbi survivor with a whole truckload of residual issues… I can feel sorry for myself and worry about whether I’ll ever get back exactly the capabilities I had before… or I can take the focus off specifics and focus more fully on results — achieving the same sorts of things I did before, but now through different means.

A lot is possible, if we consider alternatives. But the alternatives won’t come out of the woodwork and make themselves known to us without our direct involvement. And we’ll never find out what does and does not work for us, if we sit around waiting for someone else to tell us what our next steps are.

It was a real struggle for me to get out of bed this morning, and I resented most of my workout with a begrudging resignation. But I did what needed to be done, and by the time I was finished, I felt ten times better than when I started. Day by day, bit by bit, I make headway and I find my way further down the path I wish to tread. Work doesn’t do itself. Workouts don’t do themselves. Muscle doesn’t build itself.

I confirmed something very important, this past week – if I do not exercise vigorously, first thing in the morning before I do anything else, I pay for it in pain.

For those who know what it is like to battle chronic pain on a daily, weekly, monthly, yearly basis, over the course of months, even years, you know what I mean, when I say, I will do anything in my power to keep this pain from taking over my life.

For those who are lucky enough to not have that experience, you can say instead, I will do anything in my power to keep [insert something you detest and despise] from taking over my life.

I happen to be one of the former types, plagued all my born days (at least, as far back as I can remember) with pain. Painful touch. Painful movement. Painful just about everything. The only times I have been pain-free have been in the extremes of human experience — when I am either so deeply engrossed in what I am doing that my focus blocks out any sensation at all… when I am pushing myself beyond my limits to see how far I can go… when I am so deeply relaxed and entranced that nothing of human experience can penetrate the divine aura that surrounds me.

In those extreme places, I am free of pain, I am more than myself, I am a piece of a very, very, very large puzzle that dwarfs discomfort with its vastness.

But one cannot always live in the extremes. I’m neither a cloistered monastic, nor a sheltered academic, nor a professional athlete, nor a maverick rock climber. I am a regular person with a regular life, and that life just happens to be fraught — at times — with almost constant pain.

Ask me if I have a headache on any given day, and my answer will not be “yes” or “no”, but “what kind of headache?” and “where precisely do you mean?” It’s a given, that my head will hurt. And my body, too. It’s just a question of degrees.

At its worst, the pain is debilitating. 20 years ago, I had to stop working and drop out of life for about 5 years to get myself back on my feet. Over the decades since then, the pain has fluctuated, its impact on my life varying. The variation has been due, in no small part, to my mental determination to not let it stop me. In many cases, I refused to even acknowledge it, even though objectively I knew it was there. I went for years telling myself I was pain-free, while at night I would be forced to stretch and press points up and down my legs and take plenty of Advil to get myself past the searing ache in my legs, hips, and back.

Denial is a funny thing — so useful, so essential, at times, and so easily used, even when facts to the contrary are obvious and intrusive.

Over the past several years, however, as I’ve become more and more cognizant of my TBI-related issues, pain has made itself known to me, and I have ceased to deny it. It’s a double-edged sword, that. Even if I don’t deny it and am determined to do something about it, my plans don’t always work, and I cannot always accomplish the level of pain control I would like.

In those moments when my honesty is far more than my ability to deal effectively with my discomfort, I curse my newfound determination to be upfront and frank about every little thing that is amiss with me. I have so many other issues to think about — do I need to add unstoppable, unmanageable, uncontrollable pain to the mix? Wouldn’t it make a whole lot more sense, to acknowledge and focus on issues I can actually fix?

But now that the lid is off Pandora’s box, there’s no sticking it back on. I have to address this pain situation, I have to do something about it. I cannot just sit around and boo-hoo. Nor can I run away from it and keep telling myself it’s not an issue. It is an issue. A very sticky, troubling, problematic one that holds me back, perhaps more than any other issue I have. It’s not just physical, it’s emotional and psychological, too. And it demands acknowledgement and work, to address it.

So, I do. I get up in the morning — like it or not — and I exercise. I roll my aching, complaining body out of bed, pull on my sweatshirt over my pajamas, slip my feet into my slippers, grab my clipboard and pen, and I haul my ass downstairs. I fill the kettle with water, put it on the stove, and turn the knob to 3 or 4, to give myself plenty of time to work out before the water boils. Then I pull the curtains in the room where the exercise bike is, so I can work out in private, put my clipboard on the magazine holder on the exercise bike, climb on, make a note of the time I started, and I begin to pedal.

I ride for at least 20 minutes — 15, if I’m really behind in my schedule — and I work up a sweat. I hate and resent the first 10 minues of every ride. It is boring. It is monotonous. It is sheer drudgery. But it is necessary. If I don’t exercise, move lymph through my veins (the milky white substance that moves toxins out of our systems doesn’t move on its own — it requires circulation to clear out the junk we put in), and oxygenate my brain.

After the first 10 minutes, my brain has started to wake up and is complaining less about the ride. About that time, I start to think of things I’m going to do for the day, and I start to make notes. I scribble on my clipboard, trying to control my handwriting well enough to read my notes later, and I make an effort to be careful and legible. On and off, I pick up my pace and push myself, working up a sweat and an oxygen debt that gets my lungs pumping. When I’m warmed up and getting into a groove, my mind wakes up even more, and I let it wander a bit — kind of like letting a squirrelly puppy off its lead when you take it for a walk in the park. I let my thoughts ramble, let my mind race here and there, and then like walking a puppy, I eventually call it back, focus once more on my day, and make more notes about what I need to accomplish.

When I’ve reached my 20-30 minute mark, I stop pedaling, get off the bike, and go check on my hot water. I turn up the heat, if it’s not already boiling, and stretch in the kitchen while the kettle starts to rumble. When the whistle goes, I make myself a cup of strong coffee, and while it’s cooling, I stretch some more. I drink a big glass of water as I stretch, feeling the muscles and tendons and fascia giving way to my insistence. I’m warmed up, after pedaling, so I can stretch more easily. I can move a lot better than when I got out of bed, and I’m actually starting to feel pretty good about doing this exercise thing, as soon as I get up.

Once I’ve stretched, I head back to the exercise room and lift my dumbbells. I work with 5 pound weights (for now), moving slowly and deliberately. I focus intently on my form — practicing my impulse control. I make sure my body is aligned properly and my motions are smooth and not stressing my joints and ligaments and tendons. There’s no point in exercising if I’m going to just injure myself. I do a full range of upper-body exercises, presses, curls, flys, extensions, pull-ups… all the different ways I can move my arms with my 5-lb dumbbells, I work into the third part of my routine. I take my time — deliberately, for discipline and focus and impulse control are big problems for me that really get in my way — and I work up a sweat as I hold certain positions and move far more slowly than I prefer.

When all is said and done, my legs are a little wobbly and my upper body is warm with exertion. I am sweating and a little out of breath, and my body is starting to work overtime to catch up with itself again.

By the time I’m done, my coffee has cooled enough to drink it, and I can make myself a bowl of cereal and cut up an apple to eat. I sit down with my clipboard again, make more notes, review what I need to accomplish, and I get on with my day.

The days when I skimp on the effort and take it easy, are the days when I am in the most pain at the end of the day. The days when I really push myself with my weights, moving sloooooowly through the motions and keeping myself to a strict form, are the days when I have the most energy and am feeling the most fluid. The days when I don’t stretch very much, are the days I have trouble falling asleep at night. And the days when I do stretch are the ones when I am able to just crash into bed and am down like a log all night.

Two days, this past week, I did not do my workout full justice, and I paid dearly for it, the rest of both days. I learned my lesson. I haul myself out of bed, now, and I hold myself to a disciplined workout. Anything less gets me in trouble.

I’ve got enough trouble, without the pain on top of it. And if there is any way I can cut back on whatever complications I can, I’ll do what I can to do just that.

It’s hard to start, it can be tedious to do, and it often feels like an interruption to my morning, but without it, my day is toast. And I am lost at sea… floating in a brine of burning, searing agony that surely must have informed the medieval concept of eternal hellfire and brimstone.

And yet, something so simple can push back the waves, like Moses parted the Red Sea. Something so simple, so basic, so good for me. Salvation comes in strange packages, sometimes. But it’s salvation nonetheless, so I’ll take it.

After all, I’ve got much better things to do with my life than suffer needlessly.

The past couple of weeks have been crazy for me, and it’s taken somewhat of a toll. I’ve been busy with work, busy with other activities, busy, busy, and more busy. I also did some traveling for about a week to out-of-state relatives, for a big family get-together. In and of itself, it was a great time. But the change in my schedule, the long hours of driving — over 30 hours, all told, in the car — not being able to get enough sleep, and the change in food choices (how do they eat that stuff?) all threw me off, big-time.

I managed to keep it together and not completely blow-out/melt down during the trip, or immediately afterwards, which often happens when I travel to this particular branch of the family tree. But the past few weeks have been packed full of crazy-busy-ness that I now realize has been a pretty concerted effort to dull the pain of the trip.

I’m not talking about emotional pain… though it’s never easy to spend time as an outsider, when everyone else is connecting and having a wonderful time being together — I’m the oddest bird in the family, and between my difficulties in keeping up with what’s going on around me and my narrow and intense interests that aren’t run-of-the-mill, people often don’t know what to do with me.

What I’m talking about is physical pain.

Yes, physical pain — the kind that burns, that aches, that throbs, that stings. The kind that makes my clothing hurt me, that rakes my legs when my pants rub against them… the kind that makes me jump whenever someone touches me… the kind that sends a shock wave of smacking ache to the marrow of my bones when my spouse puts their hand on my forearm… the kind that keeps me from sleeping, because I can’t stand the feel of sheets on me, but I also can’t stand the feel of air-conditioning blowing across my skin… the kind htat gets worse when I am stressed or tired or upset or all of the above… the kind that I often don’t even know is there until someone makes contact with me, and I jump, and they feel like they’ve done something to hurt me. They have. They didn’t mean to, and they would never do it on purpose. But they hurt me.

It’s not just the emotional pain of family visits that gest me. It’s the physical pain, as well.

Here’s the deal — for as long as I can remember, I have had issues with a whole slew of sensory problems, the most disruptive of which was body-wide pain. I can remember, ever since I was a little kid, feeling like I was being hit, when people would just reach out to touch me in very innocent, social, appropriate ways. I would shrink back from them, and they would often take offense or get angry with me for “rejecting” them. It sorta kinda messes with your head, when the people who love you the most cause you intense pain when they try to show their affection for you. And it tends to muck up your relationship with them, when you can’t accept their (appropriate) affection, but they don’t understand why.

To tell the truth, I didn’t even understand why. It’s hard to explain, unless you’ve been there, but the experience of painful touch is such a visceral, physical thing, it sometimes doesn’t translate into words. It’s just there. You can’t describe it, you can’t even really pinpoint it. Sometimes you have no idea it’s there, until someone makes contact with you. Then, all you know is, it hurts, and you pull away to avoid it, so you can just get on with your life.

And you do things to avoid/mitigate it. You steer clear of expressive people. You avoid demonstrative friends. You always keep more than arms’ length away from other people, just in case they reach out to you. You spend time with people who either don’t like you or couldn’t care less about you, because the chances of them touching you is small to none — and it’s easier to be around those types of people, than the friendly ones who like to make contact.

These things are done on a subconscious, instinctive level, and sometimes they don’t even register with you when you’re doing them. Like pulling away from people when they come close. Like shrinking back from a hug someone is trying to give you. Like jerking away quickly when someone touches you accidentally.

And depending on how sudden or shocking the pain is, it can trigger a whole cascade of other sensations/symptoms/reactions that look a whole lot like PTSD.

PTSD symptoms of avoidance and emotional numbing

Avoiding activities, places, thoughts, or feelings that remind you of the trauma — I tend to avoid physical human contact of any kind; women frighten me, because they tend to be so tactile, and it’s literally too painful at times, to interact with them

Inability to remember important aspects of the trauma — I tend to block out the particulars of painful experiences. All I know is, it’s hurt me before, like it’s doing now

Loss of interest in activities and life in general — Why should I get involved, if it’s just going to hurt like the dickens?

Sense of a limited future (you don’t expect to live a normal life span, get married, have a career) — how precisely am I supposed to live fully, if the experience of basic human interactions promises me pain?

PTSD symptoms of increased arousal

Difficulty falling or staying asleep — could have something to do with my insomnia?

Irritability or outbursts of anger — yet one more contributing factor

Difficulty concentrating — it’s tough to concentrate, when you’re on high alert. Especially if you’re working with tactile people.

Other common symptoms of post-traumatic stress disorder

Anger and irritability — not being able to establish comfortable human contact makes me nuts and pisses me off

Guilt, shame, or self-blame — why can’t I just be normal like everyone else and tolerate a hand on my shoulder?

Substance abuse — been there. Thank heavens that’s behind me.

Depression and hopelessness — my occasional visitors

Suicidal thoughts and feelings — once upon a time, occasional visitors. Now, very rarely.

Feeling alienated and alone — not just feeling… BEING alienated and alone

Feelings of mistrust and betrayal — it’s hard to not feel that way, when everyone around you might possibly cause you pain

Headaches, stomach problems, chest pain — the first two, yes. The third, not so much

So there we have it — PTSD arising from chronic body-wide pain. Painful touch. There’s even a word for it — Allodynia (meaning “other pain”) — a painful response to a usually non-painful (innocuous) stimulus. I haven’t been formally diagnosed. That would require that I talk about it to my doctor. And talking about it out loud to anyone has never really been an option for me, except for with my last therapist who is long gone by now. It’s just too painful. Emotionally and physically.

I’d rather keep my own counsel and just live my life. Pain-free. Alone, but pain-free.

Being alone not only keeps me out of arms’ reach (literally) from people who may hurt me, but it also keeps emotional upheaval at a minimum. It’s hard to get worked into a state, when you don’t have much contact with people who affect you emotionally. I can block out all the politics and social drama pretty well. But the emotional connections I have with people… well, they’re trickier. So, I steer clear of them, by and large. And I steer clear of emotionally charged subjects with people — like avoiding talking about my chronic pain issues with my doctor.

It’s wild, how emotional distress can heighten physical pain. Emotional pain sets off an alarm state with me, and that alarm state unleases a whole avalanche of stress hormones and hypersensitive biochemical agents into my system. And the buildup of all the stuff that gets “stuck” in my system does not help me. Not one bit.

Chronic Pain Conditions
This constant activation of the alarm state leads to an accumulation of metabolic waste products in the muscle fibers, and the release of kinins and other chemical pain generators in the tissue, resulting in myofascial pain and the appearance of those seemingly intractable chronic conditions such as fibromyalgia, chronic fatigue, irritable bowel syndrome, chronic headache, TMJ and more.

And because these conditions are generated in the brain stem and the motor reflex centers in the spinal column, and routed through a perturbed, automatic, arousal circuitry, peripheral forms of treatment provide only temporary relief. Constantly activated by everyday sensory cues, normal muscle movement and spontaneous memories, symptoms grow and become more and more entrenched over time. In other words, this is one nasty gift from the kindled feedback loop that, if not interrupted, will just keep on giving.

Our epidemiology research has already shown us an astounding percentage of people with baffling chronic pain conditions and “functional” diseases that have no obvious causes, who have been found to have prior histories of severe trauma. Probably if we could tease out the subset of traumatized people who experienced substantial dissociation during their trauma, and a truncated freeze response in the midst of it, we might find closer to one hundred percent suffering from posttraumatic stress. Unfortunately for them, they are often assumed to be malingering or engaged in attention-seeking behavior for neurotic reasons, instead of suffering from a very serious, self perpetuating condition with a potentially worsening trajectory.

Included in this group of maligned and misunderstood patients would be scores of people suffering from pelvic and low back pain, orofacial and myofascial pain, genito-urinary and abdominal pain; interstitial cystitis; and the previously mentioned headache, fibromyalgia (FM), chronic fatigue syndrome (CFS), and reflex sympathetic dystrophy (RSD); irritable bowel syndrome (IBS), inflammatory bowel disorder (IBD), multiple chemical sensitivity (MCS) and migraine.

So, what the hell can I do about this? I’m of the mind that the best reason to talk about anything difficult, is to figure out what to do about it to make it better. To reduce the quotient of human suffering in the world. That includes my suffering (I’m in the world, after all). What can I do about this pain business?

Well, first, I need to get back on my schedule. I need to get back to my sleeping routine, which I’ve been doing pretty well with. I need to get back to eating the right kinds of foods at the right times of day — and I’ve been doing that pretty well, too. I also need to exercise and do other things that will enable me to discharge some of the built-up stress from the trip. I tried explaining to my new therapist how disruptive that sort of travel is to me, but they didn’t seem to “get” the intensity of it, so I’m not getting much support there. Screw it. I’ll support myself. I’ve been having a lot of good long cries, in the privacy of my own company, over the past few days, and that seems to be helping me. I also need to get back to my regular work schedule and just get some stuff done. Being productive has a way of chilling me out nicely, so I’ll do that.

And drink plenty of water. Take some Advil before I go to sleep. Listen to the Healing Trauma CD from Belleruth Naparstek to deal with the PTSD. Have a good cry. And another. And another. And make sure I let loose in my own company, away from others who neither understand nor want to understand just how hard things are for me… and end up minimizing and negating and invalidating my feelings about what I really go through, and tell me I’m fine and I don’t have a problem and I shouldn’t worry about this stuff, just because they either don’t have the emotional resources to hang with me, or they’d be too traumatized, themselves, if they knew what it’s really like to live in this body.

Most of all, I need to keep it simple. Count my blessings. Remember just much good there is, along with the bad. And remember, tomorrow is another day, and all things considered, I’m pretty lucky to be alive.

Physically, I’m in a lot of pain, these days. Ouch! Someone touched my arm the other day, and it was like they were driving a hot poker into my skin. Crazy. I hate when it happens, and the stupid thing about it is that my reaction time is slow, so I end up having a thorough pain experience, before I can pull away. How annoying.

The pain has gotten a lot worse in the last couple of weeks. I’ve been working outdoors which is great, BUT I’ve also been eating sugar and “cheap” carbs, which is such a bad idea. I really can’t make a move without some kind of pain, but I manage to keep my mind off it, so it’s not wrecking my life. Still, it might be nice to not have this stuff with me 24/7.

And then there’s that pineal cyst I’ve got. It’s a small one, but who knows what will happen with it? I think that one of the reasons that I’m just motoring along with this pain, is that I’m trying to acclimate to the constant presence of pain. Pineal cysts are notorious headache-producers, and there’s no know “fix” for it other than surgery… which I don’t want. I’d rather just live with the side-effects, I guess.

It’s not like I’m going looking for pain, but it seems to have no trouble finding me. I have headaches that do not respond to medication. Or relaxation. Or stress management techniques. I have blazing joint pain that’ s unpredictable and variable. My hands and neck and back and shoulders and knees and… well.. all of me, hurts.

Oh well. I don’t have much hope that it’s going to change anytime soon. I used to think it would, but that was 20 years ago, and I’ve sort of given up on that idea. So I’m getting in the habit of just being functional while in pain. And coming up with other ways of addressing pain, like learning.

I have to say, it really rings true for me. And I while I was having dinner with a friend the other night, they were telling me how they’ve always loved to learn. They’ve just eaten up new information and they’ve always gotten a charge out of taking in new information and putting it to good use in their life.

Interestingly, they also have a lot of problems with chronic pain — low back pain, especially. The pain pretty much derailed their life for many years, keeping them from getting decent sleep, and probably taking a few years off their life. They are in their 50’s, but they look like they’re 10 years older. It could be that their biological age — due to their chronic pain problems — is just that.

I never would have guessed that they’ve got this pain thing, which they only started really talking about with me recently. They’re one of those people who seeks out all sorts of new and novel information, and they seem to have a genuine thirst for living large, when it comes to heady stuff. Sure, they have other issues, and when they get pissy, they’re no walk in the park, but the way I’ve always seen them, is more as a hungry mind than an aching body.

It’s funny — I rarely discuss my own pain with other people, too. I don’t really get into it — there doesn’t seem to be much point. It’s just depressing, to go into the details about how my shoulders and elbows and hips and knees and back are all on fire, screaming with pain, keeping me up at night, waking me up early… and there’s precious little I can do about it. Even ibuprofin (which is the only anti-inflammatory, including prescription NSAIDs that I’ve used in the past) doesn’t always help. So, I just have to tough it out.

In fact, I rarely devote much time to thinking about my pain when it’s around. It’s just always there. In the background. Nudging me, every now and then, when I step out of line. Twinging or stabbing or whatever. Headaches. Neck aches. Back aches. Joint aches. It never entirely goes away, and I try not to dwell on it, when it comes up. Very little seems to fix it, other than scaling back on my activities and trying to get more rest and steering clear of foods that I know don’t sit well with me.

Now, when I do think about it, it just makes matters worse. I start to notice it. I start to get bothered by it. I start to get crazed and anxious and frustrated and beside myself. It’s a little like being stalked — it’s always there, lurking in the background. Not directly assaulting me so violently that I cannot function, but always reminding me that it just might step up at any time and do just that. And that drives me nuts. Feeling like I cannot escape this shadow, this constant reminder, this ever-present phenomenon that refuses to respond to medication or management techniques or even diagnosis… As Charlie Brown would say, Aaaaaaaauuuuuggggghhhhh!

One of the reasons I realize I haven’t been doing my self-assessments lately is because there are a bunch of places where I track my pain. And when I do the entire sheet and include my pain(s) in the assessment — rating its severity and impact on my life from 1-10, describing it and its impact, detailing what I am doing about it, and recording whether that worked or not — well, I can see how poorly my coping mechanisms work. And I get depressed. Really down. Just despondent.

So, I don’t self-assess. Which tells me that I need to come up with a different self-assessment approach — probably break out the different areas into separate pieces, and only focus on one type of issue at a time — the cognitive OR the behavioral OR the emotional OR the physical — not lump them all together in one place, which gets overwhelming.

But when I don’t self-assess, I get into trouble with my thinking and my behavior and my attitude. So I need to do something about this. Soon. Today, in fact.

And so, I shall.

But back to my main topic, which is about learning as a pain/stress reliever… No matter how badly my pain is, no matter how much stress I’m under, I find that learning things provides an almost other-worldly relief for me. I’ve been going through some very heavy job stuff, lately — in this economy, talk about stress — and I’ve sorely needed a break from all the intensity. I don’t want to lose my house. I don’t want to be out of work. I don’t want my health to go spiraling downhill, because I’ve taken on more than my body and mind can handle, and it all gets to me and sends me over the edge. Times like this, my PTSD and TBIs rear their ugly heads, and my thinking gets foggy, my reactions get “dumb”, and my whole system starts to go haywire. Which is about the last thing I need, when my home and my family and my future are on the line.

I need some serious stress relief, but I’ve been having a lot of trouble with being outside in the open — lots of anxiety comes up, and I start to freak out with the bombardment of all the stimuli, especially sounds, as my hearing has been hypersensitive to a point that’s starting to drive me nuts. So, I have to find something to do inside that not only takes my mind off my physical discomfort, but also provides serious relief.

That relief comes from learning. Learning new things I need to know for my job. Learning new things from the world wide web. Learning new things from friends. Learning new things from books and white papers. Learning new things that may not be all that practical, but really interest me and keep me engaged. Focusing my attention on things that fascinate me and that enlarge my store of available knowledge does something amazing for me… it cuts the pain. It not only takes my attention off it, but it seems to physically ease my suffering.

And that’s huge.

So, I’m learning everything I can, these days, about things that interest me. And I’m also learning how to pass what I learn along to other people. I come from a family of teachers — professors, elementary school teachers, Sunday school teachers, tutors, instructors. I also worked my way through what college I could manage to complete by tutoring folks in subjects that interested me. And I did a good job. I would probably be a teacher now, if I could have finished college, but that wasn’t in the cards. But I can do it now, in my own way, without the limitations of administrative types who are looking over my shoulder, breathing down my neck, saying, “You can’t say that to those kids!”

Online, in this blog, I can share and teach and instruct. And I’m figuring out new ways of getting information across. It’s my hope that I can do a better job of communicating the stuff that’s in my head to folks who can use it. ‘Cuz I’ve spent an awful lot of time figuring out how to be highly functional and “normal” as normal can be, despite a history of head trauma, chronic debilitating pain, not to mention considerable sensory issues that — when they’re at their worst — turn me into an automaton of sorts.

The information and experience has been invaluable to me, in just living my life. And others might find it useful, too. If I can use what I’ve learned to ease others’ pain — through the process of learning, as well as the experience of using what I relate — then my own difficulties have all been worth it.

Here’s an article at the Wall Street Journal by Melinda Beck on how stress contributes to pain. I think is an important, but often superficially discussed, phenomenon. The comments/discussion about the article don’t go into very useful detail (as often happens online). This whole subject really deserves more attention and consideration, but I don’t have time to address all the points here. I need to just digest it and circle back around when I have more time and a clearer view of what I think about this — which is a lot and very jumbled at this point.

Stress So Bad It Hurts — Really

“I think your real problem is stress,” the doctor said when I complained that the muscle injections he was giving me hadn’t relieved my neck and shoulder pain. “You can’t blame me for everything that’s hard in your life,” he said.

My bursting into tears only seemed to confirm his diagnosis.

It’s not like I hadn’t heard this before. During earlier bouts of low-back pain, irritable-bowel syndrome and temporomandibular joint disorder, plenty of doctors have used the stress word with me. And each time, I’ve become indignant. It sounded like “it’s all in your head” or “you’re malingering.”

That’s an outdated view, says Christopher L. Edwards, director of the Behavioral Chronic Pain Management program at Duke University Medical Center. Decades ago, when doctors said a condition was psychosomatic, it was the equivalent of saying it wasn’t real, since there was little evidence that the body and the brain were connected. “Now, we recognize that what happens in the brain affects the body and what happens in the body affects the brain,” he says. That knowledge gives us the tools to try to manage the situation, he adds.

Dr. Edwards says his pain-management program in Durham, N.C., is seeing a rise in patients amid the current economic crisis: “There’s a very strong relationship between the economy and the number of out-of-control stress cases we see.”

From Stress to Pain

Psychological stress can turn into physical pain and illness in a number of ways. One is the body’s primitive “fight-or-flight” mechanism. When the brain senses a threat, it activates the sympathetic nervous system and signals the adrenal glands to pump out adrenaline, cortisol and other hormones that prime the body for action. Together, they make the muscles tense up, the digestive tract slow down, blood vessels constrict and the heart beat faster.

That’s all very useful for outrunning a mastodon. But when the threat is a tanking stock portfolio or an impending layoff, the state of alarm can last indefinitely. Muscles stay tense and contracted, which can make for migraine headaches, clenched jaws, knots in the neck and shoulders, and pangs in the lower back. Some of those body parts are already under pressure from long hours at the computer, restless sleep, grinding teeth and poor posture.

The Gut Brain

The digestive tract has its own extensive system of nerve cells lining the esophagus, stomach and intestines — known as the gut brain — that are extremely sensitive to thoughts and emotions. That’s what creates the feeling of butterflies in the stomach. When anxiety persists, it can set off heartburn, indigestion and irritable-bowel syndrome, in which the normal movement of the colon gets out of rhythm, traps painful gas and alternates between diarrhea and constipation.

“Stress does not necessarily cause pain, but it exacerbates the [physical] situation that may already be there. It diminishes your ability to cope,” Dr. Edwards says.

Stress also creates biochemical changes that can affect the immune system, making it underreact to viruses and bacterial infections, or overreact, which can set off allergies, asthma and skin disorders like psoriasis and eczema. And stress can raise the level of inflammation in the body, which has been associated with heart disease. A recent study in the journal Psychosomatic Medicine found that stressful conditions even in the teenage years can raise the level of C-reactive protein, a marker for inflammation that increases the likelihood of cardiovascular problems later.

There are plenty of ways to short-circuit these harmful effects of stress. One of the best is physical exercise, which not only releases the feel-good neurotransmitters called endorphins, but also helps use up excess cortisol and adrenaline. Under stress, “there’s a large amount of negative emotional energy in your system that is trying to find a way to discharge,” says David Whitehouse, a psychiatrist and chief medical officer for OptumHealth Behavioral Solutions, a unit of UnitedHealth Group Inc. He adds that “stress kills brain cells. The body responds by making new ones, and exercise can help activate them and make new connections between them.”

Sleeping and Eating

Many experts also recommend getting plenty of sleep, eating regular, balanced meals and keeping up social connections — all things that people tend to forgo in times of stress.

Biofeedback, once considered alternative medicine, is now accepted in mainstream medical circles as a way for people to reduce the impact of stress. Dr. Edwards runs a biofeedback laboratory at Duke, where patients monitor their heart rates, respiration, temperature and other vital signs and learn to control them with relaxation techniques. “The goal is that once we teach you to do that, you can use it the rest of your life,” he says.

Another form of biofeedback is called Heart Rate Variability Training, which teaches people to adjust their breathing to maintain an optimum interval between heart beats that induces a feeling of calm throughout the body. “It’s probably similar to what happens in yoga and meditation,” says Dr. Whitehouse.

He adds that there is much new research going on in the field of “emotional resilience training” to help people learn to lower their anxiety levels and recover from setbacks. “People spend huge amounts of money, time and energy training their cognitive brains. What we now know is that the emotional brain can be trained as well to become more resilient,” Dr. Whitehouse says.

Emotions play a major role in how pain is perceived in the brain. In the 1960s, Ronald Melzack, a Canadian psychologist, and Patrick David Wall, a British physician, offered a groundbreaking theory after observing soldiers in World War II. “Two soldiers with nearly identical injuries from the same bomb blast would be sitting side by side in a hospital ward,” Dr. Edwards explains. “One soldier would be saying, ‘Hey doc, can you sew me up? I need to get back to my unit.’ And the other would be crying, moaning and writhing in pain.”

Drs. Melzack and Wall determined that chemical gates in the spinal cord control pain signals from the body to the brain, depending largely on patients’ emotional states. Positive emotions diminished the perception of pain, while negative emotions kept the gates open — sometimes continuing the pain even after the initial cause had disappeared.

Fear Versus Fact

There’s a growing consensus that cognitive behavioral therapy can be very effective at diffusing negative emotions. It works by examining, and challenging, the thoughts behind them. “We’d say, ‘I understand your fear, but fear is not a fact. Let’s look at the reality in your life,'” says Katherine Muller, a cognitive therapist and director of psychology training at Montefiore Medical Center in Bronx, N.Y.

It’s no surprise that being told that pain is stress related feels like an affront, Dr. Muller says. “There’s this idea among high-functioning people that ‘I’m a good coper,’ and these symptoms suggest that you’re not,” she says. Indeed, many successful people find that low levels of stress and worry help them function. “But in periods of high stress, that worry takes over and becomes the dominant feeling. You’re still going to work. You’re still doing stuff for your family, but it’s taking a toll. And suddenly your body is saying, ‘Whoa — I can’t take the tension any more,'” Dr. Muller says.

One technique she uses is to have patients keep a diary evaluating their stress level on a scale of zero to 10 several times a day and note what was happening at the time. Patterns may emerge — that headache may set in every Thursday afternoon, after the staff meeting — and there may be ways to change the situation. “The message I’m trying to send is that you are responsible for your own stress,” says Dr. Muller. “The way you are looking at it and feeling about it is more up to you than you realize.”

So is stress-related pain all in your head after all? “All pain, and all human experience, is in your head,” says Dr. Edwards. But that’s a message of hope, he adds, since there are now ways that weren’t available 60 years ago to ease pain by managing thoughts and emotions.

I finally was able to get a bunch of sleep over the past 12 hours. I got home from work yesterday, and I was utterly exhausted. I could barely stop at a gas station to top off the air in my car’s left rear tire (which has been low for some weeks, but didn’t fully catch my attention till I really took a close look at it yesterday). Once home, I took a long, hot shower to take the edge off the pain I’ve been in and help me relax, then I debated whether to stay up and spend time with my partner and hit the hay early, or just take a little nap to take the edge off my fatigue.

Not feeling particularly … “viable”… I opted for the nap. I would have been lousy company had I stayed up, anyway, and why do that to someone who’s also had a really long day? I crawled into my “cave” — the quiet guest bedroom that’s at the back of the house that is my own little retreat at home — and lay down around 6:30 last night. I planned to get up in an hour or so, when supper was ready, but when my partner came to rouse me, I couldn’t budge. I couldn’t even fully wake up. This was probably around 8:30 or so… My beloved decided to let me sleep, as I’ve been so edgy and antsy, and it was abundantly clear to them that I needed to rest.

‘Round about 10:30, I woke up a bit — had to use the bathroom — and I joined the rest of my household for a little warmed-up dinner. I generally try to eat supper before 8 p.m. (which I know is probably too late — should probably be before 7) but last night was different. I was a little concerned that I might not be able to get back to sleep, if I stayed up and had “dinner” and watched a little television, but I gave it a whirl.

And wonder of wonders, I was actually tired — yawning — the rest of the evening. I headed back to bed in my cave around midnight (I have a long day ahead of me today, and I need uninterrupted sleep all by my lonesome in my cave when I’m having trouble with insomnia). I did write a little in my journal about some PTSD stuff that’s been coming up for me, lately, but when I lay down and relaxed, I went right to sleep, which is nothing short of a miracle.

I did wake up earlier than I wanted to, this a.m. — I had hoped to sleep till 7:30, but I was up before 6:00, as usual. Oh, well. At least it was closer to 6:00 a.m. than 5 a.m. Maybe my body is preparing for Daylight Savings Time, which begins this weekend. And this way, I have time to post some info before my day starts. Not a bad thing. At least I got another 5-1/2 hours of sleep between my nap last night and right now.

One thing I noticed when I woke up this morning, was that I was extremely tense. My body felt like it was spring-loaded and ready to spring into action. This is not new for me. I usually feel this way when I’m waking up, and try as I might, I cannot seem to release the tension, first thing in the a.m. I think that’s what’s been waking me up — being really tense and tight, first thing in the morning. It’s almost like my body is gearing up for the day, in advance. Like it knows I’m going to be waking up soon, and it’s getting all charged up in advance.

I have a hard time, sometimes, getting out of bed. Literally and figuratively. Not only do I have to muster the courage to get out of a warm bed into the cold air, but I tend to not be very coordinated, first thing in the a.m. Especially when my vestibular system/balance is off, I can be very wobbly and sick-on-my-stomach, when I get out of bed. I am sometimes not very coordinated about it — I hit the floor a lot harder than I intend, and I wake up my partner, which is a PITA for both of us. So, I tend to tense up and gather myself physically — and mentally — before rolling out of bed.

You wouldn’t think getting out of bed would be such a challenge, but some days it’s just the first of a long series of difficult things I’ll have to do.

Another thing that I noticed this a.m., when I was waking up very tense, was that when I relaxed, my body started to ache and throb. My joints have been giving me a lot of trouble, lately, as has my lower back. It’s not really muscular — it’s along the areas where my muscles connect with my bone, like along the top of my pelvis in my lower back — the iliac crest, I think it’s called. My shoulders and neck and hips and back just ache and throb and burn. And it gets worse when I relax.

About 20 years ago, after a car accident that didn’t seem like that big of a deal (but sent me spiraling downward — I couldn’t understand what people were saying to me when they talked, and I couldn’t keep my job and I started drinking pretty heavily). I started having terrible, awful problems with debilitating pain. It started in early 1988 and persisted for about five years — eventually the pain got to the point where I couldn’t hold down a permanent job, and I literally couldn’t get out of bed in the morning. At the time, fibromyalgia (as well as chronic fatigue syndrome) was not widely recognized or well-understood, so even though I had a lot of the symptoms of it, then, I was never diagnosed. Comparing notes with others with FMS (or “fibro”), I see an awful lot of similarities, so I’m “lumping” my experience under the FMS banner, sans official diagnosis. I’m not sure I’ll be able to work up the nerve to see a doctor about these symptoms — my ordeal 20 years ago was pretty gruelling and debilitating in and of itself, and nothing the doctors told me or subscribed for me really helped. Ultimately, I made some lifestyle changes — stopped smoking, started taking better care of myself, quit pushing myself so hard all the time, changed my shoes from hard-soled boots to soft-soled loafers, and I started eating right — and the pain dissipated considerably. I’ve been in pain, off and on, over the years, and I tend to use it as a barometer for how well I’m taking care of myself. I must not be doing a very good job of that, lately, ‘cuz I’m in terrible pain, these days.

Then again, it could be the weather, too. All I know is, I’m in a lot of pain, these days, and it’s keeping me from sleeping. And relaxing. I think in some ways, the relaxing problems bother me even more than the sleeping ones.

How much does that suck… I mean, it’s bad enough that I haven’t slept, and that my days have been crazy-busy, and I’m having trouble with figuring out how to deal with my work. But when even the simple pleasure of relaxing is off-limits to me, and it actually increases my pain and discomfort, well, then I start to feel like the Universe is really out to get me.

I hate to be a whiner, so I’ll stop right now. But let the record show that I’m not really happy about not being able to relax without pain. I’ll have to work on that. Use my acupressure points, drink more water, exercise more… maybe work some exercise into my morning routine to release some of the tension before my day starts. And quit eating so much sugar!

Well, the day is waiting. I would prefer to not be in pain and to be able to get through the day without exhaustion and tension, but you can’t have everything. At least I’m able to get through the day on my own steam, and I have plenty of activities to distract me from my discomfort.

I just found this blog talking about Fibromyalgia and TBI — Fibromyalgia Haven. This is of real interest to me, as this may be an issue for me, as well. I’ve been dealing with a lot of stuff over the years, including debilitating, chronic pain, but I never seriously dug into the fibromyalgia piece of it. I was provisionally diagnosed with an autoimmune disorder, back in 1987, after I started having a skin rash and intense joint pain, confusion, and various problems. It was also after a car accident that scrambled my thinking (I couldn’t understand what people were saying to me — I was intensely confused), and I ended up quitting my job so I could devote myself to drinking full-time.

Over the years, I have coped with the pain in various ways, primarily through what I call “analgesic stress,” and it’s been more or less effective. I just tend to block out the pain, now, after never getting any substantive help from doctors for my problems. I know folks with “fibro” but I never really considered it might be a factor with me — until I recently came across info about skin rashes coming with fibro. That rash that wouldn’t respond to ointments was what led doctors to diagnose me with that other condition — which was never substantiated by any of the many (and I mean many) blood tests I took over the years.

I don’t have time to go into this now, but I did want to link to the blog, for your reading enjoyment.